Finding New Meaning: The Patient Experience

In this article, I want to demonstrate how a deconstruction exercise can help reframe a challenge. To put it simply, life is a collection of experiences. The process of how we assign meaning to those experiences (or even words) influences how we perceive reality. We assign meaning in order to make sense of things. Often, we are oblivious to the process of assigning meaning, which is in itself a design choice. This deconstruction exercise enables us to see the choice options, rather than committing to some perceived objective truth. Not only does it allow us to reframe a challenge, it also expands our understanding of the problems underlying that challenge. Currently I am engaged in the challenge of poor adherence to medication and medical advice so I’ll show here how this exercise is leading me towards new insights and research areas in that context.


Choose a focus

Patient living with a long-term chronic condition engaged in the activity of medication-taking.

 

For the purpose of demonstration, I’ll focus the deconstruction on just the word “patient” here. The Oxford English dictionary defines the noun: patient as “a person receiving or registered to receive medical treatment.” It is defined here in the medical context and in the hospital environment the role of the patient is largely a passive one. The word “patient” is derived from the Latin verb pati meaning to suffer. Synonyms for “suffer” include tolerate, endure, undergo, bear, etc. It does not necessarily have to be associated with a painful experience. Additionally, subjectivity and perception are inherent in any experience. We may place two people in the exact same scenario and conditions, but they may have very different experiences. Keeping this in mind, we can begin to consider the how “The Patient Experience” varies depending on context and more importantly what we can learn from these various scenarios. In this broader sense, we can say that everybody is a patient at some point in their lives. Even in an hospital environment, I find it interesting to wonder who suffers more often: the sick person or the hospital staff?

A five-minute deconstruction exercise

A five-minute deconstruction exercise

This is an iterative process. It really depends on how far down the rabbit-hole you want to go. I started with a five-minute initial brainstorm (which is by no means exhaustive) to spark some lateral thinking and think of contexts and activities where suffering and its synonyms take place. I’ve shown the first iteration here, which is barely scratching the surface. The next iteration may focus on the act of medication-taking and the medication itself. What is defined as medication and how might that definition vary with context and environment? Further down the rabbit-hole we go. In any case, even after this first iteration a more holistic picture of “The Patient Experience” begins to emerge. We now have a range of options to explore in order to enhance our understanding. Extensive research will be required to develop actionable insights, but this gives an idea of how we can frame research questions and importantly, where and who we should focus our research on.

Visualising the process – the artist, the student, the athlete or the person struggling with their mental health (and not receiving medical treatment) are all types of patients.

Visualising the process – the artist, the student, the athlete or the person struggling with their mental health (and not receiving medical treatment) are all types of patients.

As one example, the athlete also represents one who suffers, one who endures, one who tolerates. Within the expanded definition of the “patient”, the athlete exists as another type of patient. Many athletes adhere to strict diets, disciplined training regimes and commit large parts of their lives to their chosen sport. Their health (physical and mental) is paramount to success and so what might we learn from sports psychology that could be applied to the clinical setting? Or, since the act of medication-taking is not confined to just the clinical setting, in the social setting? Sports psychology is concerned with the study and practice of mental preparation, developing techniques and strategies for enhancing performance and how to cope with setbacks. The potential for useful insights that may be applicable to analogous scenarios is strong here. Staying with this comparison, the difference in the roles of the patient within these contexts also becomes a factor worth consideration. Roles are connected to culture so investigating the cultural contexts further may yield some useful further insights. I thought it would simplify things to categorise these roles into passive and active roles. Where a passive role implies lack of choice and control, an active role implies that a conscious decision was made to undertake the activity and some level of control. This categorisation led me to two especially important concepts: Self-efficacy and locus of control (incidentally, you can see how this exercise helps identify collaboration opportunities that may not appear obvious at the outset). Self-efficacy is the judgement of one’s own ability to complete a task to a certain level of performance. It is associated with the degree of belief an individual has in their capacity to meet and overcome challenges that they are likely to face in given situations and it changes with context and environment. Locus of control describes the perceived source of control of one’s behaviour. It may be classed as internal or external. Once again, the locus of control depends on context and environment.

Self-efficacy and Locus of control offer a lens through which we can analyse and understand the difference in experience between these two types of patients. I must take a moment here to acknowledge Dr. Cyril Kirwan, who has provided some useful insights and information sources relating to these concepts. Cyril is an expert in Organisational Psychology and in Learning and Development. I am grateful to have the benefit of his vast experience.

A summary of Self-Efficacy and Locus of Control.

A summary of Self-Efficacy and Locus of Control.

Begin to converge – Pattern finding and Systems Thinking

Existing in the emergent space can be interesting and exciting, but also overwhelming. It is a VUCAH environment (see previous articles), where anything can happen. Knowing how to find patterns and make connections between seemingly disparate things is important in order to start converging towards a new understanding. In order to start finding interconnections and patterns, we can think of each of these scenarios as microsystems. An individual may exist in several of these microsystems. The Ecological Model of Human Development proposed by Urie Bronfenbrenner [1] defines the Mesosystem as the point of intersection of microsystems. It “comprises the interrelations among two or more settings in which the developing person actively participates.” Applying Systems Thinking to the Mesosystem will help develop an understanding of how these microsystems are interconnected, where patterns and commonalities exist and ultimately will help in the identification of opportunities and subsequent framing of challenges related to medication-taking.

Every system has feedback mechanisms embedded in it. Analysing the feedback mechanisms may give us some new insight into the mental activity that drives the physical activity. To do this efficiently, some further categorisation helps. Jana Bajcar [2] devised a detailed task analysis of how patients take their medication based on in-depth interviews. The study focused on aspects of the medication-taking practice and how these influenced the amount of information that the patient required regarding their medication. A number of major categories were identified that describe and characterise the tasks associated with the practice of taking medication for individual patients. The categories were:

  1. Making sense of medication.

  2. Medication-taking acts.

  3. Medication-taking self-assessment.

For the purposes of comparison we can translate these categories to a more generic form:

  1. Making sense – associated with knowledge and understanding.

  2. Acts – associated with the techniques, methods and interpersonal relationships involved in performing the activity.

  3. Self-assessment – associated with the internal and/or external metrics that exist.

Visualising the feedback mechanisms present in each microsystem.

Visualising the feedback mechanisms present in each microsystem.

What feedback mechanisms exist in each microsystem and how do they influence the behaviours existing in each of the above categories? What is the source of the feedback and how is it delivered? How might each feedback mechanism reinforce or discourage (intrinsically or extrinsically) a particular behaviour? Answering these questions through research will help to refine the challenge focus. One conclusion that has been drawn from research done in the area of patient adherence to medication is that poor adherence is a natural reaction [3]. Comparing the feedback mechanisms that exist in each microsystem, we can further our understanding of why that is the case. One of the primary feedback mechanisms in the medical microsystem is how the person feels. The feedback can be ambiguous or misleading. One hypothesis to test is that this particular microsystem is lacking in adequate feedback mechanisms.

I hope to highlight how easily we create static descriptions. It helps us to make sense of things. The definition of the patient is a static description as it currently exists. It restricts a patient to existing within a medical context, which suits medical professionals and allows them to do their job efficiently and effectively. However, if we want to change, to innovate, to stay curious we must challenge static descriptions and embrace complexity. Static descriptions are not true models. That is, they do not allow us to simulate potential changes to a system [4]. When designing healthcare solutions with the intention of aiding in the self-management of a medical condition, it is worth considering what microsystem you are designing for. As I mentioned previously, assigning meaning is in itself a design choice. If the choice is made to design an healthcare application, for example, for the patient in the medical microsystem (as per the dictionary definition), the risk of the app becoming just another thing to adhere to should be contained in the risk assessment. In this scenario, despite all good intentions, the app may be perceived as being in same realm as medication by the person using the app. Finding new meaning is a way of mitigating this risk. This deconstruction exercise is but one method of finding new meaning.

References:

  1. Bronfenbrenner, U., (1979) The Ecology of Human Development: Experiments By Nature and Design, Harvard University Press.

  2. Bajcar, J., (2006) Task analysis of patients' medication-taking practice and the role of making sense: A grounded theory study, Research in Social and Administrative Pharmacy, 2(1): p. 59-82.

  3. Hansson Scherman, M. and O. Löwhagen, (2004) Drug compliance and identity: reasons for non-compliance: Experiences of medication from persons with asthma/allergy. Patient Education and Counseling, 54(1): p. 3-9.

  4. Lissack, M., (2016) Don’t Be Addicted: The Oft-Overlooked Dangers of Simplification. She Ji: The Journal for Design, Economics and Innovation, 2(1): p. 29-45